Dear all,
Joe and I are leaving for DC in the morning. Just wanted to thank the
posting regarding "story suggestion" that I used parts of to write the
following letter that went to the NBC TV channel with a similar one to
the other TV channels and the Houston Chronicle. In doing my homework,
I've sent similar letters to all the sub-committee members as well. The
beginning and endings are a little different. I'll include a copy after
this one, but since this is long, don't hesitate to delete. We
attached some 50 petitions to Rep. Young's letter that we collected
when we were in St. Petersburg last week. We have over 4000 petitions
to give Kay Bailey Hutchison when we see her. Everyone has made such an
effort--I know it will make a difference!
*********************
To Ethel Porter
Channel 2
Dear Ethel,
As you may recall, I co-chaired the “Knock-Out Parkinson’s with Mohammed
Ali” Gala last year. Thanks to the help of Channel 2 as a major
underwriter, the Gala netted over $125,000 which is being used for
research and community outreach. If you have not had the opportunity of
viewing the two PSA’s that were produced by McCann-Erickson for the
Parkinson Coalition (the two combined organizations), please call me.
They are fantastic!
Joe and I are on our way to Washington, along with Parkinsonians across
the country, to encourage the funding of the Udall Parkinson’s Bill. It
occurred to us that Channel 2 might be interested in using this story as
a follow-up.
To give you some background, I was 44 years old when I was diagnosed
with Parkinson’s disease. I know you are aware that Parkinson’s is a
progressive neurological disorder that destroys the brain cells
controlling motor function, and the available treatment only partially
alleviates the resulting stiffness, tremor and slowness of movement that
can eventually leave its victims unable to walk, to talk, even to move.
For the past 12 years, I’ve been a vice-president of the Parkinson
Foundation of Harris County. Among other things, I write their monthly
newsletter that is distributed to over 1700 families. I’ve chaired
several other fund-raisers in addition to the “Knock-Out Parkinson’s
with Mohammed Ali” Gala, and I want to be able to continue to contribute
to my community, but I've seen my co-workers robbed of their ability to
work because of the progression of their disease.
Until recently, my medications (which cost $500 a month) have allowed me
to live an “almost” normal life. But now the disease has progressed to
the point where the medications don't always work. Today I can feed and
dress myself, but the time to find a cure is running out for me. I
spent a year recovering from a ten-hour back fusion caused in part by my
Parkinson’s gait. Then due to the Parkinson’s, I fell and fractured a
kneecap.
My grandson just celebrated his 5th birthday while I watched the party
from the sidelines, because it was an “off” day. The medications didn’t
work and I couldn’t move. There are times I can't hold my two year old
granddaughter for fear I might fall with her or drop her. I want to be
able to play with my grandchildren. I don't want them to remember that
their Grandma couldn't move, or talk or smile.
Now, here’s the story…victory over Parkinson’s is within our grasp.
Four long years ago, Parkinsonians and their caregivers launched a
valiant grass roots effort to pass the Morris K. Udall Bill for
Parkinson's Research and Education. In November 1997, the Bill was
finally enacted as an amendment to a larger appropriations measure. The
Parkinson's community rejoiced, thinking that at long last the $100
million approved for research would soon be granted. Unfortunately, to
date, the Morris K. Udall Act has still not been funded.
Parkinson's affects between 1 and 2 million people in the United States
today and stands to affect millions more when the Baby Boomers, now age
51, reach 57, the average age of diagnosis. In addition to the human
suffering it causes, Parkinson's is financially crippling our nation.
According to a study done at Duke University, Parkinson’s costs an
estimated $25 billion in direct and indirect costs per year. The aging
Baby Boomer generation will greatly increase that toll, putting
additional stress on the Medicaid, Medicare and Social Security
Disability systems. And 60,000 new cases are diagnosed each year…one
every nine minutes.
A Parkinsonian friend of mine, was given a student loan to help her
achieve her doctorate when she was healthy and is now being paid
disability by our government. She would like nothing more than to be
able to go back to work, contribute to her community and pay taxes
again. With enough research, this could happen. What better way to
balance our country’s budget than to reduce the drain on our national
resources by putting Parkinsonians and their caregivers back into the
workplace!
There have been speeches before Congress, letters to editors and
congressmen, and now there is to be a meeting of PAN, the Parkinson
Action Network, in Washington, DC at the Hotel Washington, 15th Street
and Pennsylvania Avenue, NW, June 14th-June 17th. While many in the
Parkinson's community are too incapacitated to participate in political
activities such as this, those who know about it and who are able and
can afford to participate, either from their own resources or from
grants made available to them by their support groups, will descend on
lawmakers to try to make their voices, impaired by the ravages of the
disease, heard.
My husband, Joe, and I and Robert and Nancy Martone will be in
attendance. Bob Martone is President of the Houston Area Parkinson
Society. His wife Nancy, who was diagnosed at the age of 33 twenty
years ago, has had three brain surgeries and still suffers with severe
symptoms. (As you can see by Nancy’s and my ages, Parkinson’s is not
necessarily an “older persons” disease.)
This battle could be quite a story and could also be part of a larger
story on how NIH is not stepping up to the neurological diseases
associated with advancing age which could easily become the scourge of
the Baby Boomers. There is a window of opportunity now that may not be
there as Parkinson's and the other neurodegenerative diseases become
more prevalent.
A day doesn't pass that allows me to forget that I have Parkinson’s
disease and that I don't know what tomorrow will bring. Please help us
in our quest to make our voices heard. I hope to hear from you soon.
Sincerely,
Nina P. Brown
*****************
Dear Representative Young:
My brother-in-law Stanford Brown and his wife, Patricia, are
constituents of yours. They have requested that my husband, Joe and I
represent them in seeking your support for appropriations to fully fund
the Morris K. Udall Parkinson's Research and Education Act which was
passed into law last year.
When I was 44 years old I was diagnosed with Parkinson’s disease and my
family has watched the disease progress over the years. As you know,
Parkinson’s is a progressive neurological disorder that destroys the
brain cells controlling motor function. The available treatment only
partially alleviates the resulting stiffness, tremor and slowness of
movement that can eventually leave its victims unable to walk, to talk,
even to move.
For the past 12 years I’ve been Vice-President of the Parkinson
Foundation of Harris County. Among other things, I write a monthly
newsletter that is distributed to over 1700 families. I’ve chaired
several fund-raisers--the last being the “Knock-out Parkinson’s with
Mohammed Ali” Gala which netted over $125,000 and is being used for
research and community outreach. I want to be able to continue to
contribute to my community, but I've seen my co-workers robbed of their
ability to work because of the progression of their disease.
Until recently, my medications (which cost $500 a month) have allowed me
to live an “almost” normal life. But now the disease has progressed to
the point where the medications don't always work. Today I can feed and
dress myself, but the time to find a cure is running out for me. A day
doesn't pass that allows me to forget that I have Parkinson’s disease
and that I don't know what tomorrow will bring. I spent a year
recovering from a ten-hour back fusion caused in part by my Parkinson’s
gait. Then due to the Parkinson’s, I fell and fractured a kneecap.
My grandson just celebrated his 5th birthday while I watched the party
from the sidelines, because it was an “off” day. The medications didn’t
work and I couldn’t move. There are times I can't hold my two year old
granddaughter for fear I might fall with her or drop her. I want to be
able to play with my grandchildren. I don't want them to remember that
their Grandma couldn't move, or talk or smile.
In addition to the human suffering it causes, Parkinson's is financially
crippling our nation. According to a study done at Duke University,
Parkinson’s costs an estimated $25 billion in direct and indirect costs
per year. The aging Baby Boomer generation will greatly increase that
toll, putting additional stress on the Medicaid, Medicare and Social
Security Disability systems. And 60,000 new cases are diagnosed each
year…one every nine minutes.
A Parkinsonian friend of mine was given a student loan to help her
achieve her doctorate when she was healthy and is now being paid
disability by our government. She would like nothing more than to be
able to go back to work, contribute to her community and pay taxes
again. With enough research, this could happen. What better way to
balance our country’s budget than to reduce the drain on our national
resources by putting Parkinsonians and their caregivers back into the
workplace!
I can only imagine the number of decisions you must make and this may
seem insignificant in the scheme of things, but it’s my life as well as
the lives of millions who may have already lost the ability to write or
speak out in their own behalf. So many of us have worked so hard to see
the Morris K. Udall Parkinson’s Research bill passed, so a cure can be
found. Congress made a good start last year by authorizing the
research, but the job will not be finished until funding for research is
appropriated and the benefits of that research become a reality.
Thank you for your past support of the Udall bill. It was a significant
factor in getting us this far. We urge you to use your influence as a
respected voice in Congress and a member of the House Subcommittee on
Labor, Health and Human Services, and Education to persuade Mr. Porter
and the other members of the sub-committee to fully fund the $100
million.
Representative Young, YOU hold my life and the lives of millions like
me, in your hands. YOU have the power to help find a cure for
Parkinson’s by authorizing the funding for the Morris K. Udall Bill.
PLEASE help us get our lives back!
Sincerely,
Nina Proler Brown
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